i am so glad i found this site

Information about how to manage or reduce the severity of BFS symptoms

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i am so glad i found this site

Postby Scott_Allen on March 24th, 2003, 4:09 pm

hello everyone,
I found this site today...while searching for results on muscle twitching. I too, have muscle twitching all over. Mainly in my right eye. I began twitching (in my eye) last may...i ignored it initialy, but then it moved to other parts of my body and after doing a search on the net for twitching...i learned that i must have ALS and i would soon die...i too was too scared to go to a doctor, but finaly realized i owed it to my family to do so. I went to my family doctor who set me up with a neurologist. He gave me strength and reflex tests, and said i passed them all with flying colors. He then told me I needed an MRI and an EEG to rule out the bad stuff. Boy...was that a stressful day going in for those tests. As soon as my MRI was over the tech came out and said "Look, i'm not supposed to do this and since we are so close to the holidays...i dont want u wondering what we found." He then said...it was normal...i quickly said we thought i might have ALS or MS...he said that nothing was detected...i was so happy...but the twitching kept on twitching....with all the tests being normal and now i've found this site...I will no longer live each day like it's gonna be my last...Even if it is...i wont be worring about it. So thank you all for your wonderful stories.
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Postby Arron on March 24th, 2003, 4:49 pm

Hang in there Scott, you are not alone. I'm glad you were able to get tested and had perfect results :-) I am also glad that some "techs" cheat and tell us what we need to know so we don't have to wait and worry so much over a weekend or holidays or waiting for the doctor to get back from vacation. My techs did the same thing for me on several occasions and I am so thankful for it. They have no idea how stressful and how much anxiety can ruin your life while waiting for the doctor to tell you the same thing the techs are going to say anyway, afterall, the techs do it ALL day, every day, and that all they do, where doctors may only have one patient here and there that need MRI's and such, so I trust what a tech says almost as much as I do my doctor. Besides, doctors aren't always right all of the time either, so there should be no arguement on this subject from other people.
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Postby kim on March 24th, 2003, 5:44 pm

Hi Scott!

Welcome! My eye started about the time yours did too! Then migrated all over. I'm over the fear, and here for support if you need it. There are tons of people here who are extremely knowledgable and supportive. (I'm not knowledgable, just supportive :roll: )

Hope you are happy and doing well!

Kim
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it was so scary until i found this site

Postby Scott_Allen on March 25th, 2003, 6:03 pm

Yeah, until i found this site everyday, every thought, and every decision was based on the fact that i would soon die. Seems funny to me that my neurologist didn't mention this condition to me. My family really has no idea how i've been feeling and how depressed i've been...i've really hid it from them. Last night i told my wife about finding this site...od course she didn't realize how wonderful it was for me to find it...because i've kept it hidden from her. I used to overhear her telling friends that she thinks that i am really ill and she is really scared because she noticed my eye twitching....if she only knew that the rest of me was twitching too...lol. The two things that made me keep searching for answers was my doctor said the tests were normal and the fact that i havn't lost any strength...after I read the ALS websites i just waited everyday for the strength to deplete and i would test my strength continuously. I havn't been diagnosed with BFS, so should I ask my doctor about it...or because there is no cure or treatment and because it is not life threatening...should i save my money for the dr visit? I really wish more doctors were more educated about this condition....it would save alot of people from depression and agony of thinking and dwelling on dying in a short amount of time...thanks to you who have replied....u dont know how good it is to talk to people who have went thru the same things i have and how much better i feel getting all this stuff off my chest....i feel i've unloaded 500lbs of weight off my back....once again...thanks folks.
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Postby Davidd on March 31st, 2003, 9:16 pm

Scott--

Welcome to the site. I am glad you are feeling better after reading and posting some messages here. These darn twitches can be so annoying at times...but remember that as annoying as they are, they are completely harmless. I still have to remind myself of that from time to time but I'm going on 8 months of twitching and haven't noticed any weakness or anything else (except when I skip the gym and eat to much junk food!).

Hang in there with everything.

--DAvid
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Weakness

Postby Barb on June 12th, 2003, 5:19 pm

Hi;

I am fatigued, is that normal? I can hardly make it through an 8 hour day of work...constant twitching; when I stand still, or sit. My left eye has drove me absolutely crazy since late last summer. That's when all this twitching began.

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addendum

Postby Barb on June 12th, 2003, 5:22 pm

Hi;

I was diagnosed by the Mayo Clinic, in MN...with bfs...I can accept that. I have no anxiety...that would make me think it is something other than this. Does anyone know of medications? I was surprised the neurologist didn't suggest any. [email protected]
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Postby Jenn311 on June 12th, 2003, 8:01 pm

Hey Barb...

There are meds such as anti-depressants and anti-anxiety meds, or agents that act directly on your nerves, such as Klonopin. There might be others, just talk to your doctor. Have you tried cutting out caffiene? Do you think your fatigue could be caused by depression or anxiety because of your twitching? If you can hardly make it through an 8 hour day I think you probably need to plan on seeing your doctor to get a complete work up! I was feeling that way for a while and it turned up that I had a low level chronic sinus infection. If your twitching is just in your eye I don't think you have much to worry about....but I think it probably means that you aren't sleeping really well.

Best of luck! Jen
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eye twitching

Postby Barb on June 12th, 2003, 10:51 pm

Hi again-

So, the eye twitching could be from to little sleep? I did have a work-up at Mayo Clinic. They found I was a little low on Iron...everything else was fine. I just figured this fatigue went along with the syndrome. Thanks again. :lol:
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Postby Arron on June 12th, 2003, 11:49 pm

Barb, most women are low on iron from blood loss... you know, that time every month? That's why most "women's" multi vitamins have extra iron or Folic acid, which is another term for iron.

Also, eye twitching is pretty normal for BFS, and so is fatigue. You might have more of the Fibromyalgia symptoms than BFS symptoms, but either way, they are both pretty much one in the same and both benign.

Keep in mind, you said you went to the Mayo clinic... well, they ain't named after the kind of "mayo", as in mayonaise. They are one of the world's best clinics, and if all they found was a low iron count, I think you can pretty much rule anything bad out :-) because finding these bad neuro things is what they do for a living... and they aren't known for making mistakes. Hang in there...
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Postby Jenn311 on June 13th, 2003, 6:14 am

Hey Barb...

That is pretty much what sets off my eye twitches, plus I've read that is a factor. Think about getting more sleep, cutting out caffeine, ete., and see it that works. OR maybe you need glasses or a stronger prescription! THink about the muscle and what you could be doing during the day to strain it and how you could aleviate that. But if you are super tired all day and you have eye twitches, I think that may be a something to look into.
Just my two cents, though I am no doctor!
Cheers,
~jen
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Fatigue

Postby Barb on June 13th, 2003, 12:20 pm

Thanks for your advice. I do need to completely cut 'coffee' out of my daily ritual. I have alot of time off this summer...I know during those 'days off' from work, I do have MUCH less fatigue and twitching. I'm in a high stress job situation. I am looking to switch jobs eventually. Thanks again.
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Postby Jenn311 on June 13th, 2003, 7:54 pm

Hey Barb...

What kind of job do you have? I'm glad you will have a good bit of time off this summer! What you might want to try as far as cutting coffee is to taper down your consumption by making it with maybe 1/3 decaf, then 1/2, etc. until you are ready to cut it completely out or you get to a point that it isn't interfering with how you feel. I know that when I have tried to cut it out completely I get REALLY bad caffeine withdrawl headaches. I went from full caf to half-caf and I don't feel as jittery in the mornings as I used to. They say that you should also cut out caffeine after 4 pm, as it interferes with sleep if consumed later than that.
Good Luck with that!
~Jen :D
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Postby Barb on June 23rd, 2003, 11:29 pm

I'm a nurse. I have been cutting back on the coffee. Tried to completely cut it out...not a good idea. I just love the java! I will just keep tapering little by little. :lol:
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